Introduction
Literacy is a set of competencies involving a continuum of learning
using written, print, and digital mediums—that can be objectively
assessed—allowing the individual to participate fully in the community
and wider society [1]. UNESCO operationalizes the measurement of
literacy as the ability to both read and write a short, simple statement
about one’s own life [2], and global literacy rates have been
steadily climbing over the course of this century, e.g. leaping from
21% in 1900 to 86% in 2015 [3]. In general, there is a linear
relationship between literacy rates and years of education, but there is
a point on the continuum of literacy, where due to several social,
geographic, medical, and economic factors, that a person does not
acquire a sufficient capacity of reading, writing, and counting, and is
therefore considered to be illiterate [4]. What is troubling is that
approximately 18% of U.S. adults (~43 million) have low
literacy levels, and even in the highest scoring countries for literacy,
there are alarming proportions of adults still performing at this lowest
level, where 5% of adults in Japan and 11% in Finland perform at or
below level 1 literacy [5].
The relationship between reading ability and health, known as “health
literacy”, broadly reflects the skills and competencies required to
operate within the healthcare environment. Results from a systematic
review of health literacy and child health outcomes show that people who
read at low levels are generally 1.5 to 3 times more likely to have an
adverse health outcome (including parent and child outcomes) when
compared with those who read at high levels [6]. The most current
definition for health literacy has been put forth by the International
Union for Health Promotion and Education (IUHPE) Health Literacy Global
Working Group, who offered the following: “health literacy is an asset
that can support a wide range of health actions to improve health and
well-being, to prevent and better manage ill-health”. More broadly,
health literacy is determined by both individual and social factors,
including the individual skills necessary to function within the
healthcare system, and the ability to make appropriate health care
decisions with a circle of care that positively impacts health. These
skills include, but are not limited to, print literacy (the ability to
read and understand text and locate and interpret information in
documents), numeracy (the ability to process quantitative information),
and oral literacy (the ability to listen and speak) [7, 8] (seeFigure 1 for other pillars of literacy).
Although a useful construct, our ability to measure health literacy as a
single variable is limited. Nonetheless, research to date has focused
mostly on reading ability as a proxy measure for health literacy
[9]. In a systematic review on health literacy, it was found that
although there are several well-validated tools to measure health
literacy, the majority of high quality research on this topic focuses on
using the Rapid Estimate of Adult Literacy in Medicine (REALM), or the
Test of Functional Health Literacy in Adults (TOFHLA), including the
short version (S-TOFHLA). Within the body of literature reviewed, the
authors concluded that no one instrument was better than the other (i.e.
correlation coefficients, r = .74 to .88) at predicting the
overall impact of adult health literacy on one’s ability to function in
the health care environment, or on predicting overall impact on health
outcomes of the adult or child [10]. More recently, a screening test
called the Newest Vital Sign (NVS)—using a nutrition-label
approach—has been validated and has several advantages, i.e. it
is available in Spanish, whereas the REALM is not, it can be
administered much more quickly and assesses quantitative-numerical
questions better than the TOFHLA, and it provides better discrimination
of health literacy skill levels [11]. In a global sense, however,
the high correlation between these health literacy measurement tools
suggests that they measure essentially the same underlying construct
where the assessment of low health literacy is predictive of poor health
outcomes [12].
In contrast to these well-validated tools and related body of research
in adults, the work on assessing health literacy in children is still in
its infancy. A recent systematic review by Okan et al. (2018) on child
and adolescent health literacy measurement outlined up to 15 different
tools found in the literature [13]. Comprised of both generic and
specific health literacy instruments, the majority of the tools tested
children from 11 to 18 years of age, but there were 5 tools that
measured health literacy of children younger than 11 years old. Although
it is promising research in child health literacy is growing, the
current body of evidence shows that the available tools are not
adequately measuring and/or depicting health literacy. Within the
current body of research, and with the understanding that the work on
child health literacy tools and outcomes is preliminary, higher levels
of health literacy have been associated with better health behaviors in
adolescents [14], whereas, lower-than-average literacy among
adolescents seems to be related to risk-taking and violent behaviors.
Specifically, after adjusting for sex, race, and age, children and youth
who have low health literacy have a significantly higher odds of carrying
a weapon (2x the odds), being threatened by a weapon at school (2x the
odds), being in a fight that resulted in injuries requiring treatment (3x
the odds), and missing school because of feeling unsafe (2x the odds)
[15]. It should be noted that there are very likely other societal
factors that co-vary with low health literacy, so these findings must be
interpreted with caution.
Examining findings from eight countries from the first European
comparative survey on health, it was shown that almost half of the
respondents (47%) had limited (insufficient or problematic health
literacy) [16]. Similar results have been shown in earlier studies
from the United States (US) and Canada. The survey conducted by the
former Canadian Council on Learning estimated that about 2/3 Canadian
adults and 9/10 of seniors lacked the capacity to obtain, understand and
act on health information and services and make appropriate health
decisions on their own [16]. According to the US Department of
Health and Human Services, 9 out of 10 adults have difficulty using the
everyday health information that is routinely available to them in
different settings in their daily lives [17]. This body of research
indicates that low parental literacy is related to worse health
outcomes, particularly for young children. It is in this context of low
health literacy where a main area of study emerges as paramount when
discussing the well-being and safety of parents and children, and that
is, medication literacy. Studies have shown that adult patients with low
health literacy levels are often unable to name or describe how to use
their current medications, have a limited understanding of their
medication and the associated side effects, and are often less likely to
ask questions to their pharmacists [18, 19]. In order to properly
consume their medications, individuals are required to read their
medication labels and the associated medical information, comprehend
what to do in case of a missed dose or side effects, and sometimes they
have to calculate the proper dose to consume. Furthermore, individuals
not only have to be able to take their medication and be able adhere to
the full course of their own therapy, but they also have to take care of
the medication schedules for their children. To be sure, the impact of
low health literacy is drastically precipitated when the care of
children is taken into account, as pediatric patients are susceptible to
medication error due to lack of appropriate pediatric formulations, the
liquid nature of pediatric dosage forms, the availability of
non-standardized devices for measurement, dose calculation mistakes,
ignorance of caregivers, and inadequate information and counseling by
physicians [20, 21]. In a sample of 17 845 respondents, children of
parents with low health literacy also have been shown to have a 32%
higher rate of depression when compared to parents with high health
literacy [22], and low parental numeracy is associated with higher
body mass index and childhood obesity [23]. More than this, the
impact of low medication literacy cannot be underestimated in the
context of disease management. A summary of the effect of low health
literacy in the context of several common chronic conditions in
pediatric populations is presented in Table 1 .
The use of the health literacy concept in the context of pharmacy and
medication is not new, but formal definitions of health literacy in the
context of medication use have only been operationalized in the past
decade [24, 25]. More recently, via a thorough Delphi analysis, the
definition of medication literacy has been updated with a shift away
from the focus on the individual-level, patient specific concept of
medication literacy. Thus the most recent definition of medication
literacy now highlights the importance of healthcare providers and
industry, and has been operationalized as “the degree to which
individuals can obtain, comprehend, communicate, calculate and process
patient-specific information about their medications to make informed
medication and health decisions in order to safely and effectively use
their medications, regardless of the mode by which the content is
delivered (e.g. written, oral and visual)” [26]. In the public
health context, medication literacy is integral to the safe and
effective delivery of health care. Medication literacy is in fact a
sub-element of health literacy, and both sharing over-lapping concepts
such as numeracy, visual literacy, and computer literacy, for example.
It should be noted that the scope of the overlap of these shared
competencies between health literacy and medication literacy seen inFigure 1 are not to scale and are only meant to serve as a
heuristic. As an example, recent work by Gutierrez et al. (2019)
reported an association between numeracy and medication competence that
was independent of the influence of general health literacy, suggesting
that numeracy skills represent a unique component of medication
literacy. To date there is only one validated tool to assess medication
literacy, The Medication Literacy Assessment tool (MedLitRxSE). The
MedLitRxSE was developed by Sauceda et al. (2012) to provide researchers
and health care workers with a tool to evaluate the patient’s ability to
access, understand, and act on information related to medication use.
The MedLitRxSE assessment tool is directly correlated with health
literacy in adults, but being a new tool, to our knowledge no studies
have been done in caregivers or adolescents [25]. As the concept of
medication literacy evolves it will be important to advance with
assessment tools that take into account elements that describe the
broader outcomes and goals of medication literacy; highlighted inTable 2 are key elements that must be taken into consideration
when developing new reliable tools to quickly and efficiently assess
medication literacy.
It is clear that improving the patient’s ability to understand and make
appropriate decisions depends on improving their health literacy and
ensuring the information is both accessible and understood. It is not
possible to visibly tell who has low healthy literacy by simply looking
at the individual, and as a result, it should be assumed that most
patients will have difficulty understanding health information. One way
to help mitigate risks in misidentifying differences in health literacy
is to us a universal precautions approach [27]. With this approach
precautions are best practices instituted uniformly in a standardized
fashion to improve communication and participation for all patients
regardless of health literacy [28]. Universal precautions recognize
the contribution of health literacy to health care disparities and seek
to improve access to health care systems for all users [28]. Indeed,
due to the high variability in health literacy levels across communities
and cultures, using the clearest language possible is paramount. Health
care providers should also assess in real-time if the clear
communication is working and incorporate additional targeting and
tailoring methods as necessary to ensure that patients receive the
information they need to make appropriate health decisions. Even if
patients do receive usable spoken and written information, it could be
argued that this information is still not sufficient even with adequate
levels of health literacy. Therefore, in addition to this passive
information approach, active strategies that attempt to change a
behavior or thinking of an individual must also be considered in an
effort improve health outcomes of the parent and child.
Active interventions are strategies that attempt to change a behavior or
thinking of an individual through patient involvement, whereas, passive
interventions are strategies where a patient is not required to
participate or respond to the intervention. An example of an active
intervention is an educational “teach-back” program—where the
patient restates small pieces of information such as how to fill liquid
to a certain volume, for example. In a recent meta-analysis of 21 active
interventions studies that reported data on medication knowledge, 16
studies showed that active interventions resulted in a statistically
significant improvement [29]. The Ask Me 3™ is another active
intervention commonly employed, and by encouraging patients to become
active members of the health care team, patients have consistently
reported higher satisfaction and found this intervention helpful in
learning more about their medical condition or illness in their visit to
the doctor [30]. An alternative method to help patients with low
medication literacy to navigate the inter-connected lanes that pave the
health care system is the “show-back” method—another example of an
active intervention—where a patient demonstrates how they would follow
the pharmacist’s medication instructions for administering an asthma
inhaler with a pump, for example. This type of patient learning has
proven to improve knowledge and adherence and can lead to improved
health outcomes. On the other hand, an example of a passive intervention
would be when a patient is sent home with a set of simplified medication
instructions on information leaflets, supplementing verbal counseling
with written instructions [31, 32]. The importance of this type of
communication can be explained using the example of medication-related
information at hospital discharge, where the parent must navigate
through the discharge plan with a child already in duress. Pediatric
populations are confronted with a myriad of complex information at
hospital discharge due in part because of the use of unlicensed (e.g.
compounded by pharmacists), off-label medicines, and weight-based
dosages. Indeed, the importance of written materials can reinforce
verbal communication and improve recall and satisfaction among parents
of children being discharged from hospital [33, 34]. There is good
evidence that educational leaflets with accurate, easy and comprehensible
wording, as well as picture-based instructions, are good ways to support
verbal medical advice as a passive form of communication [35-37].
Successful results have been noted by incorporating leaflets for eczema
action plans, which are individualized tools to help caregivers and
patients self-manage eczema [38]. Furthermore, similarly beneficial
child outcomes have been attained by incorporating action plans for
anaphylaxis [39], where a systematic review found that anaphylaxis
action plans directed at the parent and child can have the potential to
reduce the frequency and severity of further reactions, as well as
improve knowledge of food avoidance techniques [40].
With the understanding of the current climate of low
health-and-medication literacy levels across much of the world, it is
important that the written information be accessible and, according to a
large body of research, be at no higher than a grade 6 reading level
[41]. In fact, from a recent systematic review by Wali et al. (2016)
of interventions to improve medication information for low health
literate populations, written information was the most commonly used
intervention [29]. The authors purported this may be explained by
the fact that current pharmacy practice legally requires pharmacies to
provide patients with written medication information. Of the 47 studies
published between 2005 and 2014, successful interventions other than
simple written information fell into four other categories of medication
information: verbal information, label information, reminder systems,
and educational program/services. The aim of these health communication
strategies and information systems is to increase knowledge, attitudes,
or behaviors. In relation to medication safety and literacy, well-tested
and validated pictograms should also be included as a strategy to
improve medication literacy. According to the International
Pharmaceutical Federation (FIP) guidelines for the labels of prescribed
medicines, the use of pictures to convey medical directives should not
be used single-handedly and should always be combined with written
instructions. The guiding theory of pictogram use in any field of study
is that when exposed to an image, the verbal memory may be triggered
reinforcing memory traces and subsequent recall; in order to do so, the
message needs to be clear, appropriate for the intended audience, and
must focus on actions rather than information. Clear and well understood
pictograms or infographics have been shown to have clinical importance
with the potential to improve a patient’s comprehension and recall of
drug-related information [42, 43]. More than this, in a recent
systematic literature review by Sletvold et al. (2019), the authors
found that of the 17 studies included, 10 studies (58.8 %) reported a
statistically significant effect of pictogram- containing interventions
on patient adherence to medication therapies [44]. Taken together,
given the current worldwide COVID-19 pandemic, the role of developing
culturally-specific pictograms will no doubt be brought to the fore in
our efforts to bring novel health and medical literacy information out
to the public.
Self-monitoring, generally defined as the awareness of symptoms through
measurements, recordings, and observations, has also been shown to help
with medication literacy. With the near ubiquitous nature of digital
technology even in third world countries, self-monitoring tools are
being applied with newer digital interventions focused on the
portability and accessibility often seen with mobile technology. For
example, the use of mobile technology with the combination of an
electronic chip on a blister pack has been employed to improve
medication adherence, where patients were reminded to take their
medication through a text message if the medication was not taken out of
the blister pack [45]. It is clear that as a result of the broad
access to the internet and mobile devices, much of the population uses
the internet to search for health-related information [46]. Mobile
health apps are dramatically changing how patients and providers manage
and monitor chronic health conditions, especially in the area of
self-monitoring [47]. To be sure, adolescents are heavy internet
users, where some liberal estimates have found that 98% of adolescents
use the internet every day [48]. Developing eHealth literacy skills
and improving mobile medication literacy information among our youth is
important because they consider the internet their primary and best
resource with which to find health information [49]. Considering
that previous studies have reported a significant relationship between
internet use and higher eHealth literacy levels among adults [50],
one can postulate precipitously greater eHealth benefits in the youth
populations due in part to the combination of adept computer skills and
the incorporation of eHealth into educational curricula at younger ages.
Clearly, the importance of a universal precautions-based approach in
designing eHealth services will be integral to ensuring the delivery of
this type of information. Smith et al. (2019) have paved the way to
clearly identify these barriers and disparities in the accessibility to
digit health information [28].